Being Diagnosed With Relapsing Remitting MS

  • While living with MS I am defined by my "category." It shapes not only my perceived future with MS, but also how I wear it. It’s the hope-uncertainty thing as opposed to the fear-uncertainty thing. Does that make sense?  Of course this is coming from a member of the RRMS (Relapse-Remitting) club.

     

    When I was diagnosed, my first response was what is going to happen to me? We all ask that, no? So I looked at the specs for RRMS and felt relieved by the definition. Ok, so any lost abilities will return. That has its perks. While reading more I was glad that I didn’t have PPMS (Primary Progressive MS). I prefer RR to P-anything. P is the scariest word of all. And just when I was feeling good about it, the other foot-dropped. There is no way to know if or when RR will turn P. 

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    From that point, I grabbed on to whatever statistic I could find that would assure me I wasn’t going to make the switch. But the thing is, it's not cut and dried. Not everyone sits neatly under the stereotypes of these categories.

     

    I have been living with RRMS 22 years and was glad to learn that most people change clubs at about 15 years. Great! I’m a lifelong member of club RR. But wait, looking back over these two decades, I recognize that in spite of my RR membership, there are certain symptoms that have never gone away and thus have created a pile of lost abilities stuck off in the corner of the clubhouse, while I cope.

    So I revisit the definition:

     

    A clinical course of MS that is characterized by clearly defined, acute attacks with full or partial recovery and no disease progression between attacks.

     

    Hmm. I guess I’m in the partial recovery department. That’s ambiguous. I’m not sure how to feel about that.

     

    How does your category make you feel?

Published On: June 07, 2010